Kicked out of Hospice

One of the first questions I was asked when I was quite ill in the hospital was “What are you hoping for?”  Random question.  Do I answer it with a question?  Do I get no preamble or explanation?  I was out of it and drugged.  I wanted to live out the number of days God gives me.  I want to continue being wife and mom, as long as God grants. I answered, "I want to live."

Hospice personnel filed that “wrong” little answer in their notebook and have continued to come back to it.  Two days ago the social worker and head nurse once again confirmed that I want to live rather than die.  As a result, I am now down-graded from Hospice care to Palliative Care.  Hospice is only for those who want to die.

My oncologist continues to desire to monitor my blood work and treat the cancer so that I have less pain, become more mobile, extend my life, and perhaps get a blood transfusion so I can regain energy.  These are not allowed in Hospice – only comfort measures on the passageway to dying.

It was absolutely surreal to sit and talk with these people.  My mouth was agape!  I queried,  "Are you like a death squad?  Is this really what you tell patients – that their only option is to desire to die?  You really don’t encourage the spark of life inside to bloom and grab on to a few more months?"  I really like all my home care people.  So it is a struggle for me to let them go.  They say I’ll have nice ones with Pallative care too.

Yet, I must admit, a month ago, in the hospital, that was mostly where my mind was – that this was the last passage; there was peace, and I desired ease and lack of pain.  So, I don’t say this to judge those in hospice – but rather to say it was just a very strange conversation and a bit spooky now that I’m “out of hospice” category.

I am upgraded!  I am eating better.  I’m a bit more mobile.  Help is still needed around here, but I am no longer fearful to be left alone for short times.  We will work on a new plan.  Hospice was free, Palliative is not – back to the drawing board.  God is faithful – always!

My heart continues to be full of joy and anticipation of what is around the corner of each day, of each minute.

"This Was a Good Day – But it Was a Different Day"

These are the words I spoke to Dave before I dropped off to sleep last night.  "Good" and "Different" have changed their definitions over the months.  Now, good is receiving news of better blood work results.  But still "Good" like a hike to the top of the Whittier Hills, being able to see the Hollywood Sign on one side and Mt Baldy to the other, and then the red cranes at Long Beach – sometimes even Catalina Island. 

"Good" are the short visits from friends; invigorating, like the a 6 am run to Michigan Park, running through Whittier College, stopping for short conversations with a bunch of  guys gathered in the dark near a building doing some frat kind of thing in the morning dark.  "Good" like a morning swim at Palm Park under starry skies, that change to deep blue, and orange and red and reflect amazing iridescence off the rippling pool water.  Morning enchantment.  Now, shampoos poured over my head into a basin – a fresh baptism, refreshment. Different, good.

Accomplishments are cheered.  No longer that I made it to the top of Mt. Whitney, or Baldy or Badin Powell… but that I used the walker and and circled the house.  I sat on the couch and could see two more rooms.  I went outside to the patio and painted a flower.  My thrill, tears, laughter, joy, happiness, match those huge strides of the past.  Emotions are great that way.  Jesus is joy!  He allows me such a wide range of appreciation!  Laughter comes easily.

There are the struggles.  A friend stopped by to pray with me and helped me pinpoint guilt that I feel being dependent.  Fear is a component, as is control.  How can I ensure that I don’t control the lives of my family and close friends?  How can I still be cared for?  What if I don’t get strong enough, fast enough and everyone grows bitter and weary in service?  What if the well grows dry?  I pray for healing so I can do again, or I think to go home with Jesus, and free up everyone’s responsibilities of me.

This is one of those things I can deal with in my head and figure out – but my heart, my deepest belief system needs to catch up.  After prayer, I knew that there was a break through, but it must go deeper, for I laid awake too long last night wondering what we will do next week for my care.  I asked Dave to help pray for me.  He did.  But "control" wanted him to grab the schedule and make the plan, not jut pray for peace. 

LOOK, I say to my soul, how FAITHFUL God has been, why do you worry?  Dave prayed exactly as he should have.  Oh my soul, REST, TRUST.  We are each exactly in the place Jesus would have us.  I asked not for cancer and bedtime.  My friends and family have not asked that I be here.  Yet God has allowed these places.  And He IS glorified in them.  As He asks of others there has only been guilt free, joyful response.  It is my part to trust the Holy Spirit and rest in His guidance – REST.  Trust.  Wait and see what the LORD will do.  I am on a path with this cancer.  Others are on crazy paths with friends and family–  plates are full for today.  God leads and guides them, not me.  Release control. Trust, Laugh, Wait.

Over the weeks, there is always Dave and my kids, but also He has brought friends, relatives, sister-in-law, Kansas friend.  It has all fit, impeccably.  It is a day by day, moment by moment trust.  Conversation last night with friends was about a 1,000 mile bike trip I made with my friend Susi when we were in our young twenties from LA to Colorado Springs.  We had a rough map and went for it, never quite knowing where we’d purchase our next meal, or spend our next night.  We experienced the thrill of adventure to see how God would provide.  Well, here’s to my next adventure.  Please join me in praying for more of that absolute trust, anticipation of surprise, planning without guilt (allowing God to call people forward in joy, not guilt or control on my part).

Some may have heard that Seth is moving out this week.  I am super excited for this next step in his life.  I bless him.  Yet, he has been a rock and steady presence for me here at home.  I’m sure that is playing into my angst a bit. Nevertheless - my excitement for his next chapter, far exceeds the angst!  I continue to bless my kids with freedom.   How I love my family!!!

In case you missed the latest health update - in a nutshell: Blood work came back yesterday that the tumor marker fell a lot again.  It is back to what it was in March '14!  Still high - but dang - going in the right direction now.  The calcium levels that were so high that I ended up in the hospital twice this month are now normal!  My pain level is managed now.  The main thing is my weakness/energy level. I'm anemic. The doc recommends a blood transfusion so I can start feeling normal again.  I was quite hoping he'd shoot me up today so I could do go a David Wilcox concert at our little local Whittier College tomorrow night.  I've had the tickets for several months, purchased by faith.  But, I don't know - I'm pretty wiped out at 8 pm. 

There you have it!  Good days - new definitions!

CORRECTIONS/ Additions - Oct 4, 2014

 Grace

Since my last blog submission my computer died, and I have not looked at one response, like or dislike.  I am ashamed.  I never submit until I’ve sat on a pre-submission for at least 3 or 4 days and transformed it to what I really want it to stay.  Last time I had this incredible sense of urgency to just get it out there.  Not my style.

The underlying problem: I have one set of doctors telling me there are some months left for me, and another set saying weeks; there is a bit of pressure on.  I’m still holding out for the miracle on earth… this thing still happens. Yet it leaves me with an urgency to get everything done, and fast.

So I sent it, with some regret, undone.  I will not change it, rather

correct a serious omission -

Grace. 

I ask forgiveness of  all of you who have moved passed the stage, or matured through the stage of marriage being simply, "blood, tears, sweat, and poop" and also to those who are not faking/lying. 

Because they found  Jesus’ way.  We do finally look away from the years of “Let me explain again why I do what I do, and let me please keep fixing you.”

We finally ask Jesus – How do you “do” relationship?  He responds, “What have you seen?”  “Well, I see Grace.  I blow it; you love me.  You overlook my mess, and you love the new creation that is You in Me.  You never condemn me.  You laugh, you hold me, you pick me up.  You don’t blame me; you get me. You forgive and NEVER take offense.”

He tells me to do the same with others.

Life of Grace.  In marriage it so refreshing.  No offense.  ah.  Laughter returns.  Freedom returns.  Kindness reigns.  Peace rests.  This is the marriage I do see in others, once they gave up the “fix-it” and “self-defense jobs.”  This is what Dave and I are living in the midst of  ….in sickness.

This is how the last blog is now ending.

Thanks for listening.  Sorry for the offense.  Yet, in fact, with Grace, no offense was taken I’m sure.

“In Sickness…” and Honoring my husband David

 We stood at the altar over 25 years ago and said that line to each other – “In sickness and in health, till death do us part.”  We had an idea what we were talking about, both barely 30.  But now!  We get it.

I started getting him ready for the sickness stuff on our honeymoon.  I cried and had a panic attack at the Maui Airport. (He still can't figure out how his world traveling wife hit that wall.)  Not the first crying fit.  

Losing our first baby was hard.  The ambulance, ER, hospital.  I hit very early menopause with kids at ages 2, 4, and 6 and needed to call a friend one midday: I’m coming over now.  I don’t care if your kids are vomiting, napping, anything.  I’m about to either bite my kids' heads off  or scream at them.  And they are precious and loved, and I don’t want to be a monster mommy.  I need to be accountable - right now!  Dave worked with me through it all.  Loving me.  Thank God that didn’t last long.

The first cancer when our kids were 12, 14, 16.  And Dave and I began learning what that “sickness” vow was truly about.  How often he held me as I moaned in pain.  He washed me, fed me, sang to me.  He carted me unwillingly to the ER.  I was always so stubborn about hospitals.  Mostly the ER.  You get stuck there.  And cry a lot.  The hospital was different, when I was strong, walking the halls, I’d read everything and learned about patient rights.  Ha, ha.  Then I became “that patient.”  (Overplayed the cards sometimes.)

Cancer number two, the next year.  Stage 4, 3 ½ years later.  Dave hung in there through all those chemo treatments.  I wanted to quit all treatments.  He urged me on.  He prayed over me.  He saved me.  (Jesus too, of course.)  Now… shall we talk about all that he does to care for me, say, below my waist?  No.  I stand in awe of such a servant. 

He’s a self-employed man who does not have the luxury of taking family leave for 3 months to take me through this.  He gives until he’s worn out.  Last night at ten he laid down only to hear me say, “Uh, Dave, one more thing…” another half hour of his precious sleep time.  Frequent occurrence – usually much later.  And he helps with the shopping, laundry, cooking, cleaning. (and thanks to many who are pitching in with my care and the rest of “my” duties.)

Who could ever criticize this man?  Uh, me.  I’m sure you’ve heard me over the years.  We wives do that.  Partly to remind people, “No, we are not a perfect couple.  And secondly, that this marriage is forged in blood, sweat, tears, and poop.  Many marriages are forged the same.” 

Another example of missing the forest for the trees - I’m the budget gal, our family generally had no budget for fun drinks when we’re out… except for Dave… took me years to let him have that freedom.  (Nancy, Kelly, my mom, others, continue to free me up by example.  We’ve  all since been known to get something besides water!)   My gripes have gone much deeper.  What a waste - all that criticism.  How could I miss how privileged I am to be married to him?  Ain't none of us perfect.

The things he loves I didn't do often enough, I do now.  I hold his face when he kisses me.  I kiss his cheeks.  He loves that.  Why did I not slow down enough before?

He is talkative, yet he has led our family by example.  He has shown our kids how to love a wife by loving me so well.  Every anniversary, he’s taken me away for a weekend – even if postponed by births.  How I hope that my son has studied him well, and will learn such a servant heart for his future bride.  I hope my daughters will marry a man like him. They will forever be his crowning jewel, as I am Dave's.

If Jesus chooses healing for me on this side, I will return to those stupid struggles.  It’s what we do.  I hope though, I am greatly improved.